Welcome to our site This site is a place for the people who love a child with a rare disease, disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones. We have felt fear and triumph, desperation and hope. I have never felt more supported, or more isolated. I hope to use this website as a place to share information, support and stories. This website and community will grow through your contributions. So please, consider sharing information or a story or building a profile. Thank you. xo, nora
Aspiration We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.
Donate If you have found this site to be helpful, please consider making a donation. Every dollar supports my work on this website or is applied directly to medical expenses.
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Show All Summaries | Hide All Summaries Beliefs & Values Meaning of Family
The way we define or talk about family is of critical importance, and understanding the academic, political, social and practical consequence…
Topics Support topics: finance, relationships, insurance, education, health care quality & access, uncertainty, language, culture, ethnicity and socioeconomic status.
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Foundational Thinkers As I read and learn about families, youth, communities, social networks and health, the people below are either cited in reference to foundational ideas, semina…
Relationships A child with a pediatric diseases changes the world for those that love him or her. And with this new world there become new joys, new stresses, new rules tha…
Seeking Information When your child has a rare disease, finding information can be one of the most frustrating aspects of the same process. Up until this point you may have assume…
Health care I think a lot about health care quality, what it is, how you know it when you see it and how you measure it. I am in part inclined to think like this because …
Power “Exposing power-relationships and working to minimize inequality are essential preparation for participation in a democracy.”
Jerry McClelland (1997)
I be…
Psychological dynamics
I read and write frequently as a mother, as an advocate and as a doctoral student. Please check back for updates and contact me with any suggestions!
Political No description found for this item.
Resources This will be a growing repository for resources. While websites don't take the place of help from real people, they can be quite helpful in certain situatio…
Stories I find strength in reading other people's stories. Loving a child with a rare disease makes demands on you and provides incredible rewards and reading abo…
Nora's story This is my story. Not my children's story. I will write when I can and will post the most recent entry at the top. I am afraid this will sound like it com…
Online Resources
Click on the categories below to view the resources. Please email us with resource suggestions as we are excited to build and grow thi…
Books Ideas Books for Children
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Books for Teens
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Books for Siblings
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Books for Caregivers
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Specific Rare Diseases I can only build up this content with your help! I will start with the disease that I know best and work from there. If there is a disease that you would li…
JORRP Juvenile-onset recurrent respiratory papillomatosis (JORRP), is an uncommon condition, occurring in approximately 2 per 100,000 children in the United States1…
Propranalol Ayrie is using propranalol to treat his RRP and we are having pretty decent results. It's exciting because it's something we can do that doesn't require being…
Avastin
Avastin (Bevacizumab) is a humanized monoclonal antibody that recognizes and blocks vascular endothelial growth factor, the chemical signal that stimulat…
Phenylketonuria (PKU) Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine. The following i…
Cloverleaf Syndrome Kleeblattschadel Deformity, or cloverleaf syndrome is a type of craniosynostosis in which there is premature closure of multiple or all bones of the skull (sutu…
Tracheomalacia My son was diagnosed with Tracheomalacia on 1/25/10. I have mixed reactions... 'are you kidding??!!' is the first reaction. I mean, how many complications…
Atrovent & 'the mask'
Ayrie has been taking Atrovent for his trachemalacia. Somehow the drug holds open his trachea making it less 'floppy' so it doesn't close in on itself.
I wa…
Humor Kid With Cancer Hopes To Realize Dream Of Meeting Competent Oncologist
One definition of satire is to ridicule a situation or event in order to expose or corre…
About the author As I write this on the eve of 2010, I am a single mother living in Minneapolis with my two boys ages 2 and 3. My oldest boy, Ayrie, was diagnosed with a rar…
FAQ What is a rare disease?
Rare diseases have a low occurrence rate, but how low depends on how a particular country or region defines 'rare'. For example, in E…
Contact Us We would love to hear from you! Please complete the form below and we will reply to you as soon as we are able.
All respectful comments or questions are welcome.
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Site Map No description found for this item.
- Thank you nurses! by: Nora Murphy
March 2, 2010, 17:52Those of you who spend any time in hospitals know that while the relationship you have with the specialist is of critical importance. The life of your child …
- Looking Back by: Nora Murphy
February 6, 2010, 09:01This is such a journey! I just found this post on facebook from nine months ago. It was from Ayrie's last surgery in Chicago, just before we moved to Minne…
- Project Health: Meeting needs with simple ideas by: Nora Murphy
February 2, 2010, 17:53Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me... getting real people to make smal…
- SOLVE Fearlessly by: Nora Murphy
January 19, 2010, 15:30SOLVE is a great set of steps listed by the Children's R.A.R.E. Disease Network (click here) designed to help you organize you to help you take action on behalf…
- A New Sense of Normal by: Nora Murphy
March 29, 2010, 20:48
This post is written by my sister Emily (the beautiful bride below). This post shows not only how amazing and special she and her husband are, but also ho…
- Our First Donation!! by: Nora Murphy
February 5, 2010, 21:11Thank you, thank you, Nadine for being our first contributing supporter. Your generosity is greatly appreciated.
Nora, Ayrie & Shiya
- World Voice Day by: Nora Murphy
April 14, 2010, 11:09Every year on April 16, otolaryngologist-head and neck surgeons and other voice health professionals worldwide join together to recognize World Voice Day. World…
- Rare Disease Day(s) by: Nora Murphy
February 18, 2010, 12:05A repost from Science Blog. I thought this was a nice summary of why rare disease day exists, and why 'rare' adds a dimension of complexity to disease identif…
- Moving Ahead Together: Celebrating the Legacy, Shaping the Future of Maternal and Child Health by: Nora Murphy
February 8, 2010, 21:05Moving Ahead Together: Celebrating the Legacy, Shaping the Future of Maternal and Child Health
March 6-10, 2010
Gaylord National Hotel and Convention Center
…
- Women's Health 2010: The 18th Annual Congress by: Nora Murphy
February 7, 2010, 21:09Women's Health 2010: The 18th Annual Congress
Mar 26 – 28, 2010
Washington, DC
Women's Health 2010: The 18th Annual Congress is sponsored by the VCU Ins…
- The perspective of family friends by: Nora Murphy
June 3, 2010, 19:13
Also posted on: The Children's Rare Disease Network
To know Nora, Ayrie and Shiya is to absolutely love them. Spend an hour with Nora and you’ll…
- friends by: Nora Murphy
March 24, 2010, 12:09We often talk about how children and their families are impacted by rare diseases. But you'll notice on the front page of this website that I want to include …
- Have you checked out google health yet? by: Nora Murphy
March 1, 2010, 11:17If you haven't you should! You can track your health information on-line and get links to health information that has some credibility. Unfortunately my he…
- power, culture and health care quality by: Nora Murphy
February 25, 2010, 13:13I am white and educated. I have certain privilege that come along with these attributes. But I also made below the poverty line last year, my children a…
- Project Health: Meeting needs with simple ideas by: Nora Murphy
February 2, 2010, 17:53Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me... getting real people to make smal…
- A Sample Letter to a Representative by: Nora Murphy
January 23, 2010, 12:31
I have often been told by well meaning people to write a letter. The letters are meant to serve different purposes and to address a variety of hurdles tha…
- Thank you nurses! by: Nora Murphy
March 2, 2010, 17:52Those of you who spend any time in hospitals know that while the relationship you have with the specialist is of critical importance. The life of your child …
- Have you checked out google health yet? by: Nora Murphy
March 1, 2010, 11:17If you haven't you should! You can track your health information on-line and get links to health information that has some credibility. Unfortunately my he…
- power, culture and health care quality by: Nora Murphy
February 25, 2010, 13:13I am white and educated. I have certain privilege that come along with these attributes. But I also made below the poverty line last year, my children a…
- Project Health: Meeting needs with simple ideas by: Nora Murphy
February 2, 2010, 17:53Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me... getting real people to make smal…
- Communication matters by: Nora Murphy
January 17, 2010, 15:00I recently did an informal survey about health care quality for one of my classes and found that good communication between patients and doctors, between specia…
- Waiting to see a specialist by: Nora Murphy
January 12, 2010, 12:16I can't imagine having to wait months to see a specialist. I remember in January of 2008 when my son was diagnosed with a rare pediatric disease, Juvenile-ons…
- Welcome by: Nora Murphy
January 25, 2010, 14:29Welcome to our site. This is a place for the people who love a child with a rare disease,disorder or illness... the child, parents, siblings, aunts, uncles, g…
- Innocence lost... how my son's rare disease has made me more fearful by: Nora Murphy
May 6, 2010, 11:43This post is a bit dark and depressing. So feel free to stop reading now! It's titled 'Innocence lost... how my son's rare disease has made me more fearful'…
- A New Sense of Normal by: Nora Murphy
March 29, 2010, 20:48
This post is written by my sister Emily (the beautiful bride below). This post shows not only how amazing and special she and her husband are, but also ho…
- what does stridor sound like? by: Nora Murphy
March 26, 2010, 22:24If your child has JORRP or any other disease that causes airway obstruction you have likely heard the term stridor. I have spent many a night awake, listening…
- Are there additional HPV genotypes that cause JORRP? by: Nora Murphy
March 20, 2010, 22:35The European Journal of Pediatrics recently published an original paper with the following abstract. Every once in a while someone writes into the RRPF listse…
- questions many 4 year olds don't have by: Nora Murphy
February 21, 2010, 22:18One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may h…
- Rare diseases and the similarities between 'Education' and 'Health' by: Nora Murphy
February 19, 2010, 10:49My son was diagnosed with a rare disease two years ago. He has had twenty surgeries, countless doctors appointments and has been robbed of his voice. As a…
- New Propranalol Clinical Trail by: Nora Murphy
February 10, 2010, 23:46There is a new clinical trial for propranalol, the drug that my son is taking for RPR. It says invitation only but if you are interested, your hospital may …
- Pitt Researchers Receive Patent for New Head and Neck Cancer Treatment by: Nora Murphy
February 3, 2010, 19:28It seems that this article is saying that the new drug might treat JORRP and RRP. What do you think? Click here for the full article.
The new treatment is …
- JORRP: Ayrie's 18th surgery by: Nora Murphy
January 6, 2010, 14:29[/caption]
Hello everyon…
- The Invitation by: Nora Murphy
May 3, 2010, 13:52
The Invitation
by Oriah Mountain Dreamer
Have you read this poem before? My friend posted a quote from this poem on her facebook page and it really…
- A New Sense of Normal by: Nora Murphy
March 29, 2010, 20:48
This post is written by my sister Emily (the beautiful bride below). This post shows not only how amazing and special she and her husband are, but also ho…
- questions many 4 year olds don't have by: Nora Murphy
February 21, 2010, 22:18One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may h…
- Narrative Medicine by: Nora Murphy
February 18, 2010, 11:04My friend, Julie Wight, just introduced me to the idea of narrative medicine. I am reading my first article and I think I might be hooked! Part of what int…
- Blog for Rare Disease Day, February 28th by: Nora Murphy
February 11, 2010, 13:00Here's your opportunity to write a post for Rare Disease Support and be a part of something bigger! It's pretty simple. You send me a blog post (anywhere fr…
- Looking Back by: Nora Murphy
February 6, 2010, 09:01This is such a journey! I just found this post on facebook from nine months ago. It was from Ayrie's last surgery in Chicago, just before we moved to Minne…
- JORRP, Tracheomalacia and our latest adventure by: Nora Murphy
January 29, 2010, 07:05Here's and excerpt from an email that I sent Ayrie's surgeon this Sunday morning:
I am not sure how Ayrie is doing. This Monday will be 4 weeks since t…
- emotionally delayed by: Nora Murphy
January 29, 2010, 05:54I was reading through my notebook for school and I found this note that I wrote to myself on November 2, 2009.
Ayrie had his surgery on 10/30/2009 and we got…
- JORRP: Ayrie's 18th surgery by: Nora Murphy
January 6, 2010, 14:29Ayrie looking at the Charles River out his hospital room window Ayrie looking at the Charles River out his hospital room window
- what can families do to help everyone thrive? by: Nora Murphy
March 28, 2010, 12:11Again, this is copied from a fantastic resources provided by the University of Minnesota's Health Systems. If you are a parent, reading this list might reassu…
- How do kids adjust developmentally when they have a rare disease? by: Nora Murphy
March 26, 2010, 11:56When I knew I was expecting my first child, I quickly bought books about racing multi-race children. I wanted to be prepared for the ups and downs, to know wh…
- Beautiful cards to support caregivers by: Nora Murphy
January 31, 2010, 14:16"My friend's child was just diagnosed with a rare disease. What do I say?"
"My sister has been struggling to take care of herself and her family through …
- travel funds...only helpful for those predictable diseases? by: Nora Murphy
January 25, 2010, 04:21For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here.
Ayrie's breathing …
- Make traveling a reality with a travel companion for your family by: Nora Murphy
January 11, 2010, 14:04Okay, I know. With medical bills and other health related expenses, it's hard to think about taking a vacation! But if possible, it's also wonderful to relax …
- travel funds...only helpful for those predictable diseases? by: Nora Murphy
January 25, 2010, 04:21For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here.
Ayrie's breathing …
- Make traveling a reality with a travel companion for your family by: Nora Murphy
January 11, 2010, 14:04Okay, I know. With medical bills and other health related expenses, it's hard to think about taking a vacation! But if possible, it's also wonderful to relax …
- Just a Mom Wanting to be Heard by: Nora Murphy
June 21, 2010, 07:09Originally posted on Neely's Miracle.
It’s why I built this site…
Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of…
- Desperate Measures by: Nora Murphy
May 7, 2010, 13:58
This is a repost from the Children's Rare Disease Network. It's so poignant and familiar. I could feel my heart racing as I read this story.
xo nor…
- give a voice to rare diseases with iWish by: Nora Murphy
May 4, 2010, 16:49The iWish project is managed by CheckOrphan. Please visit their website for more information.
Rare diseases need your voice, creative solutions and iWish.
i…
- Computer chips, worms and gray matter: more similar than you think by: Nora Murphy
April 23, 2010, 09:51Even though this blog is about rare diseases and their impact on children and loved ones, I think its interesting to explore other topics related to biology, ph…
- From Social Entrepreneurship to Social INTERpreneurship? by: Nora Murphy
April 20, 2010, 10:59Here's some food for thought......
In his 2010 Skoll World Forum speech, Jeff Skoll said: “Changing the world is a team sport, everyone has a role to play.…
- health care reform by: Nora Murphy
March 22, 2010, 12:08I have to admit that I have been moved to tears more than once today. Health care reform was passed last night and my son now can't be rejected from plans due…
- The Missing Voice of Patients in Drug-Safety Reporting by: Nora Murphy
April 30, 2010, 05:04The New England Journal of Medicine posted a fascinating article about drug side effects. It revels that all of the side effects listed on drug information…
- World Voice Day by: Nora Murphy
April 14, 2010, 11:09Every year on April 16, otolaryngologist-head and neck surgeons and other voice health professionals worldwide join together to recognize World Voice Day. World…
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Disclaimer Nothing on this site constitutes medical or legal advice. I am a mother and advocate who is engaged and enjoys sharing my family's experiences JORRP and news about rare diseases and health care. Please consult your own health care providers for advice on your unique situation.
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